How crazy is it to not do chemo?

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Zenmushroom
Zenmushroom Member Posts: 41

Hey everyone. I have stage II, 2.5cm, Her2+, Est+, Proj- cancer. Just finished surgery (lumpectomy) and found out that my cancer is actually stage II instead of stage I.

Anyways, I will prospectively be starting chemo in a few weeks.

I have two choices. TCHP regimen, or AC + T + PH.

Dr gave me survival stats of treatment with chemo compared to treatment without based on my age and cancer type. When I say "chemo," I'm not including hormone therapy.

..........

Mortality over next 10 years with treatment but no chemo (28%)

Recurrence over next 10 years with treatment but no chemo (47%)

..........

Mortality over next 10 years with treatment and chemo (14%)

Recurrence over next 10 years with treatment but no chemo (23%)


Comments

  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited January 2018

    Your question has really made me think, because when I was first diagnosed I was sure I would refuse chemo, no matter what. I was so afraid of the side effects and how it would probably ruin my quality of life. Luckily I never had to make that decision but after reading these boards for the last year and a half I have a new perspective.

    Chemo is hard but people make it through it and get on with their life. But you aren't offered just chemo - you're being offered herceptin and perjeta, a powerful tool that is targeted to your specific cancer and will cut your recurrance from 50/50 to 1 in 4. How awesome is that! If it were me I'd grab those stats and run with it.

    Wishing you the best of luck as you make these difficult decisions

  • Zenmushroom
    Zenmushroom Member Posts: 41
    edited January 2018

    Thanks! However, I'm now confused because I used an online tool called PREDICT developed by Cambridge, and according to their results, chemo would only increase my odds of survival over a 10-year period by 8%. I wish I knew which stats were more accurate. Also, the PREDICT calculator doesn't mention recurrence (which is probably higher, probably 20% given the PREDICT info). I wish I could just do the Herceptin without all the other stuff.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2018

    Zen, I really understand your wish to avoid chemo but as I recall Herceptin is most effective in concert with chemotherapy. Herceptin & Perjeta along with chemo seem to be extremely efficacious.

    As dismaying as it is, if I were in your shoes I'd throw a pretty good tantrum at the world and then (sullenly) accept the need to do chemo plus HP. I'd also work at re-framing the issue to see chemo in a more positive light - I'm not saying that YOU need to, but I would definitely have to!

    In regard to your other post re: which regimen - I'd also search out a few studies comparing AC to TC and make careful notes. If you decide on Taxotere, be sure to look into cold capping. There's a very good thread on this board on that topic which you may find very helpful. In my experience, most MOs sort of downplay its effectiveness but I'd take that with a grain or two of salt.

    Whatever you decide, good luck. It's a crummy set of decisions you're faced with but at least you have HP to considerubly up your odds.

  • Zenmushroom
    Zenmushroom Member Posts: 41
    edited January 2018

    Thanks, Hopeful!

  • AgathaNYC
    AgathaNYC Member Posts: 473
    edited January 2018

    ZenMushroom - What are the main concerns you have about having chemotherapy? Side effects during treatment? Long-term effects? Toxicicty on the whole body?

    It's a really personal decision but spend some time really dissecting your reasons for possibly refusing chemo. Once you get to the nugget that really worries you it might help to drill down on that aspect. Do some specific research and get some opinions.

    I had no choice but to do chemo since I have triple negative breast cancer, but that's the decision making approach I applied to what sort of surgery to have. It helped me.

    Good luck in your treatment whatever you choose!

  • Leatherette
    Leatherette Member Posts: 448
    edited January 2018

    I am at the other end of TCH, and I am glad I did it, even though it was really hard. I figure that I had a very small chance of getting it at my age, and I did, so I am not playing when it comes to numbers. I finished Nov. 9, and my hair is growing back, my neuropathy is going away, and I am pooping without the assistance of any laxatives or stool softeners. Yay!

    Not to paint a rosy picture, because it is an emotional and physical trial, but there is an end. I also didn’t want to go through it when I was older if I could help it.

    Best to you, whatever you decide.



  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    Zenmushroom, as I remember you are only 29years old, don’t you think chemo would give less chance for recurrence. You still have so many years to live. Chemo is doable even for this old bird, you should handle it better than me.

    It isn’t an easy journey and you might need to take some time off for infusion. Also aren’t you going to need radiation also?

    Wish you luck on your decision.


  • Zenmushroom
    Zenmushroom Member Posts: 41
    edited January 2018

    Thanks, Paulette. I'm probably going to do it. Just wanted to make a post to address my nervous jitters. And yes, definitely have to do rads. During chemo, could you still work? Did you have to take part of the time off, or the full time off? Could you be around people?

  • Mellymel69
    Mellymel69 Member Posts: 1
    edited January 2018

    Zenmushroom- Your post caught my attention because I have been battling the same exact question about chemo post-mastectomy (12 weeks of Taxol & Herceptin, then 9 months of Herceptin for me). The side effects are scary and having a miserable year are not at all appealing. I'm not sure of your diagnosis date, but, for me, since I heard the chemo news on Dec. 20th, each day I panic a little less about chemo. This forum has helped so much! It's really hard to choose to do something that is going to suck. I am getting a 2nd, and maybe a 3rd, opinion on chemo. If all the info is the same, then I will focus on ways to suck it up and start looking at chemo as a benefit, as something that I will be thankful for later, when I don't have a recurrence (I have no idea how I’m going to create that shift though!) I am sorry you have to make this decision. I wish you the best and hope you will post about your final decision.

  • Zenmushroom
    Zenmushroom Member Posts: 41
    edited January 2018

    Thank you, Melly. I'm also conflicted about whether to do AC-THP Versus TCHP Treatment, since I've been given either option.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2018

    While this study data has been around for a while, the first two names at the top of this study are the docs who brought Herceptin to the market and thus helped pave the way for its use for early stagers. My oncologist prefers TCH due to the cardiotoxicity of both anthracyclines and Herceptin. The cardiac issues resulting from Herceptin being usually reversible, but with Adriamycin they are usually not. I did 6 TCH, and would do it again. I had no issues being around people, Neulasta injections the day after chemo kept my WBC in good shape, but I did take a leave from work - more due to the five surgeries I had in the 16 weeks prior to chemo. I started chemo very much behind the 8 ball, but if I was able to just do the initial surgery I think I could have continued to work. I did return to work 30 days after my last infusion per pre-arranged terms of the leave.

  • Zenmushroom
    Zenmushroom Member Posts: 41
    edited January 2018

    SpecialK, did you experience any neuropathy from your routine?

  • Wonderfulmom
    Wonderfulmom Member Posts: 38
    edited January 2018

    Hi. You can’t hold these stats as absolute truth because they are averages of many cancer patients and everyone and their situation is different. I wouldn’t base life or death situations on those stats. Let the doctor make the decision. That is my advice. He or she has the training and experience and may also have an intuition aboutyou as a patient.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2018

    zen - I had tingling of fingertips and my tongue that resolved prior to the next infusion until about the half way point. The amount of tingling did not really cause any issues or disruption and I maintained fine motor skill and could do everything I did previously. By infusion #4, the tingling in fingertips, bottoms of feet and tongue did not resolve before the next infusion, but also did not get worse. All numbness and tingling were gone by a couple of months after the last infusion - and again, did not interfere with much. Throughout chemo I did take 30g of L-glutamine (3 doses daily of 10g of dissolvable powder in a cold, non-acidic drink - it is tasteless, but don't mix the powder with food - trust me on this, lol!), I also took a capsule of B6, and 1500mg of acetyl l carnitine, all with my oncologist's knowledge. Acetyl L carnitine has since been discouraged due to a study that came out that indicated it worsened neuropathy, but the study used megadoses - at least double what I was taking. I am not sure if the body can utilize more than 500mg daily, so that may be a good amount to stick to. Of course, ask your oncologist before taking any supplements. There are some who ice their hands and feet for neuropathy prevention - I did ice but I did it to prevent nail lifting - I am less convinced it prevents neuropathy.

  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    I have AC and taxol, I was semi retired before Dx, afterwards I took a leave. I’m at my 60, and I still have energy to do 40 min walks most of the day during chemo. Many people worked during chemo, sure they took some time off when they do not feel well. Some of them work at home on some days. When I did AC, I was covert careful on some days, I avoid crowds because I know my WBC is low.

    For neuropathy, I have to stop on #9 taxol because of neuropathy. I iced my hands and feet during infusion still got neuropathy. 2/3 of my feet were numb and my fingers were all numb. Now I’m 8 weeks post, feet got 80% back to normal, fingers are much better almost 90%. I’m so happy Neuropathy wasn’t permanent for me. I took all the vitamins as MO suggested (same as SpecialK) somehow I can’t avoid this side effect. Everyone is different you might not have th problem I have.


  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2018

    I chose no chemo with an oncodx score of 34. Doing fine 6 years out.

  • sheriegen1
    sheriegen1 Member Posts: 3
    edited January 2018

    Zen, I am so glad that I saw this post...my mom is struggling making this decision right now. She is really scared and is worried that she won't be able to handle chemo. The unknown is what's really getting to her head so I am going to share these posts with her to see if it helps make her decision. I think hearing opinions from others who have been through it really helps.

    She was diagnosed in early November +, +, - and had a lumpectomy (it was a little over 2 cm). She is healing well after surgery and has had minimal pain. The pathology came back node negative but her oncotype is 34. It was recommended that she do 4 rounds of Taxotere and Cytoxan, followed by 4 weeks of radiation, and then TAM. She will be 68 next week.

    Does anyone have experience with these two drugs? I think she needs to hear that it's do-able and that she won't be miserable every minute of every day for 3 months.

    I am so grateful to read everyone's posts...I've been having a hard time wrapping my head around everything and am so relieved I found this website...extremely helpful!!!

  • randrgirl
    randrgirl Member Posts: 83
    edited January 2018

    Zen- to answer your question, everyone is different -/ and depending on what type of work you do—but I am just about to wrap up chemo and I work full time. It’s been a long five months but working actually helped get me through treatment. I take my infusion day off and use the weekend to recover. I also have the option to work from home if I’m having rough days. So you can work if you create a schedule that works for you and is agreeable to your job. Best wishes whatever you decide

  • Zenmushroom
    Zenmushroom Member Posts: 41
    edited January 2018

    Thanks, Eight. Did your white blood cell count alter your ability to be around people

  • lrwells50
    lrwells50 Member Posts: 254
    edited January 2018

    The first local onco I saw proposed AC plus Taxol. My second opinion onco said he preferred TC. I was HER-, so didn’t have that issue. From my research, AC scared me with the possible heart issues, and the possible permanent neuropathy with Taxol. The secon MO said he had only one patient that had permanent hair loss with Taxotere. I decided I was more afraid of the neuropathy than the permanent baldness. The local MO would have gone with the TC decision, but wanted me to have a port. The other MO said with 4 courses, he’d rather me not have a port, so that’s how I decided.

    You can have neuropathy with Taxotere as well, but you could ice your hands and feet to try to prevent it. I have Reynaud’s, so we decided icing might exacerbate that problem, so I didn’t do it. I have had some finger numbness recently, but I had that pre-chemo, and think it’s because I’ve been knitting a lot, and we’ve been in the teens here, which is unusual.

    I’m 67, and I couldn’t skip the chemo with a clear conscience even with a 24 OncotypeDX. I’d do the chemo, as I had no real problem with it, not even nausea, which was my real fear. That’s not to say some people do have problems, but you can always stop if you decide you can’t take it.


  • Gwinnettgirl
    Gwinnettgirl Member Posts: 28
    edited January 2018

    did they do a recurrence score on the tumor or just general stats? I would ask them to test it.

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2018

    Yes you can always stop treatment at anytime. But you may have permanent damage that doesn't show its head until months maybe years down the road.

    Bottom line we need safer effective treatments, that message is hopefully being heard in the medical community.

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